Every day I read posts here about the appalling treatment - or lack of - we have all experienced in trying to live well with thyroid disease.
And often we all go through the same journey of self-doubt, humiliation from GPs and the frustration of not being believed before we seek the knowledge and support to advocate for ourselves - or self medicate. And we kick ourselves for the years of hell we endured.
So I’m sharing this story as evidence that WE are not in the wrong!
I was in hospital last week having a second op on my foot; was in theatre all ready to start but a key team member was delayed and we were all making small talk.
Apropos of nothing my surgeon asked me why I had given up running ? (Which was a long time ago).
Well, I told him, I became severely ill over about 2 years with undiagnosed thyroid disease, and then have battled for years to get adequate treatment.
And it was like I had opened a floodgate - and he asked me about my symptoms etc then told me how his best friend from med school had been ignored (basically all our stories), misdiagnosed, et cetera , and that it was shocking that diagnosis and treatment was so inadequate at best, and harmful at worst.
I could only agree of course. But if NHS doctors and consultants, et al, struggle to navigate the system they all work in, then we should not feel undermined when advocating for our treatment and listen to ourselves.
It’s not a lot of comfort to everyone struggling - but don’t doubt give up on yourself.
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HandS
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The nurse who took my bloods last year was also woefully under medicated - She told me her blood test results, couldn't lose weight, fatigued etc etc. She had accepted the gp telling her results were 'normal', but she still felt rubbish. Naturally I put her right and pointed her in the direction of this site. Total lack of understanding by the whole medical profession.
One of my friends works in the NHS. Both I and her mother told her for years that she was almost certainly hypothyroidal before she was finally diagnosed. A few years later, her symptoms strongly suggest (I'd say it's as close to 100% likely as you can get without saying it's 100%) that she is still very under-medicated, but as one white-coater, she cannot yet bring herself to doubt or question consultants in another department in her hospital trust. She still has faith in the NHS generally, even though her own department is on the brink of collapse most of the time (not through anything she does). It's so sad to watch - she's struggling and her under-medication is making her ill in other ways, but she won't advocate for herself, so is going to remain ill and get worse until at some point her endo spots the problem (we all know how unlikely that is, and how long it could take). So sad
I think that's a mental hurdle we've all struggled with - that only we can advocate for our health and that the nhs is actually failing us as patients. It certainly took me years of frustration with my gp to finally seek answers.
The last GP run blood test I had, the nurse said don't give up asking for the tests I need on the nhs and I'd not believe how many were coming in saying the same thing.
My husband has said to me yesterday, if this GP call doesn't get further treatment started he expects me to book a private endocrinologist ASAP.
Its similar to medics who contracted Long Covid and who've had to navigate not only the disbelief of colleagues and the NHS but who have struggled to access effective diagnosis and care. They've also come across the ridiculous NHS employee sickness policy.
Plus they've seen first hand how punitive the benefits system can be. It shows it doesnt matter who or what you know, we can all be victims of the system.
I am having a course of Talking Therapy at the moment. We started with "health anxiety", but rapidly moved on as the therapist could see that my level of health anxiety was appropriate given the awful response from NHS GPs and consultants to my conditions, the worst of which (adrenal insufficiency) they likely caused (the useless endocrinology consultant is blaming the respiratory team, possibly correctly, but I think he's jumping the gun - I don't consider it definitive yet, just beyond his level of expertise). The therapist clearly works with lots of people with similar experiences of the NHS and is herself pretty damning of the state of the NHS.
I tried CBT last year as I developed acute balance issues and wondered if anxiety was either the root cause or was at least driving it. I was pretty annoyed as during the assessment I'd had with therapist over the phone, before the sessions had started, she'd flagged me up as having health anxiety.
When I saw the other therapist running the face to face sessions she immediately crossed it out as inappropriate given I have several conditions diagnosed, not imagined.
When I also explained how badly treated most of them are and how you are pretty much left to get on with it without help or support, she completely got it. I've said for years the NHS is terrible for chronic conditions.
The CBT did nothing as my balance issues arent anything to do with anxiety.
I used to post on the Fibro board but had some disagreements with some of the forum members who seem to have a touching faith in the power of the NHS to effectively manage Fibro. I've found them to be a complete waste of both my time and my sanity. Not wanting to be contentious I no longer post there.
They simply offer antidepressants in spite of very poor evidence that antidepressants can help with chronic pain or addictive drugs like Pregablin which have some pretty awful side effects and is ineffective to boot.
I've been diagnosed with Fibro for approaching 20 years and there's nothing new been offered in all that time despite Fibro being common. I'm surprised GP's dont offer leeches, which probably do less harm and are a nice old fashioned remedy. I'm guessing they know antidepressants dont work, they are just hoping we dont. And they wont stop the pain, but will stop you complaining about it.
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